Sadly, Noel passed away in July 2019, three years after being diagnosed with PSP. Here Dawn tells us about her dad’s diagnosis journey.
Despite being an athletic and active man, dad developed knee problems and following two knee operations he retired from work aged 64.
When dad first started to show changes in his personality we thought it was because retirement was making him bored and frustrated. The impact of the ongoing knee pain and medication he was taking for this was also a consideration.
Initially dad became suspicious and paranoid whilst he was at home and his speech was slurring a bit. Being a typical alpha male, he wouldn’t really talk about it, let alone admit anything was wrong to us, so he refused to see his GP.
On holiday in Lanzarote, dad started to have falls. Mum had really noticed a change in his walking stance. He no longer walked upright, he leaned forward and seemed to shuffle.
We spoke to the GP about our concerns and the GP invited dad to the local surgery under the guise of a check-up, but it was really to have a chat about the changes he was experiencing.
The GP was pretty good and recognised it could be a neurological condition. Dad had to take a memory test and a CT scan showed some brain shrinkage which led to him being diagnosed with vascular dementia to begin with.
However, the GP queried this diagnosis and more tests followed. Due to his walking stance, dad was the assessed for suspected Parkinson’s. But with a lack of a tremor, the GP questioned this too and mentioned that PSP could be an option.
We were referred to Dr Wilson at the Walton Centre. Dr Wilson said it could be PSP but he wasn’t sure. More tests followed and he finally received his PSP diagnosis in 2016, after two years of testing.
As soon as we had the diagnosis confirmed, we began googling PSP like mad.
We found it really difficult having not heard of PSP before and not knowing anyone who had experienced it first-hand. Mum attended a Local Group in Liverpool but she didn’t really feel it provided the information she needed at that time, so she only attended two or three meetings.
We rang the PSPA Helpline and spoke to some lovely ladies. They sent across useful information but we felt home visits would have been useful too.
The medical professionals we came into contact didn’t have a good understanding of PSP. The Parkinson’s nurse was nice but she didn’t really know anything about PSP so wasn’t sure what to do with dad. The GP said they couldn’t help any further either.
Julie from the Walton Centre came to visit us once but that was more to assess dad. There didn’t seem to be any support for us, the family.
In 2017 dad went into respite care to give us a bit of rest. But we then had him transferred into a nursing home as it was becoming too difficult for us to continue to care for him at home. His behaviour was increasingly difficult and it was really tough on my mum.
At home, he regularly fell. He wouldn’t listen to mum, or me. We would ask him to sit still whilst we got something from another room but when we returned he’d be on the floor after falling over again.
He had also become quite aggressive and paranoid. We were trying to help him but he fought back. Looking back now, we realise it must have been a really scary time for him. He was very aware what was going on but still wouldn’t talk to us about how he felt or what was happening.
The nursing home staff were pretty good, but dad was their first PSP patient. Mainly they just had people with dementia and Parkinson’s. It meant caring for dad was as steep a learning curve for them as it was for us. They were pretty supportive of my mum though.
In the nursing home, they had him off his feet straight away. He started using a wheelchair, which meant he wasn’t falling as much. They looked after all of his day to day care, such as washing and feeding. When he tried to feed himself, it would go everywhere. He eyes had become really sensitive to light, natural and artificial, and so had to wear sunglasses regularly.
Quite quickly after dad moved into the nursing home, dad started to lose his speech. Despite mobility issues, being able to talk kept him going so it was really sad to see him lose this connection to the world. By the end he couldn’t speak well at all, we really struggled to understand what he was trying to say to us and he was too poorly to point at pictures to try and tell us want he wanted.
We had said no to PEG feeding so unfortunately when swallowing became a problem, even with pureed food being slowly spoon fed to him, we began end of life care.
Dad sadly passed away in July 2019 three years after his PSP diagnosis.
We hope in the future, awareness of PSP increases so that care of the person living with PSP becomes easier to coordinate and more support is available for the whole family.